Family members' experiences with intensive care unit diaries when the patient does not survive

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The intention of the intensive care unit (ICU) diary has been to ‘fill in memory gaps’ and promote psychological recovery among patients 1. A detailed narrative of the stay in the form of a diary might be a way to reduce the postdischarge symptoms of post‐traumatic stress disorder (PTSD), anxiety and depression 3. Accordingly, ICU diaries have been the subject of studies exploring how they might help patients to reconstruct their memories and understand their time in the ICU. Hence, the diary has been a useful tool in the debriefing process following intensive care 1. In particular, it serves as an adjunct for the postdischarge follow‐up visit to the ICU by providing a document of the events that occurred during their stay, through which patients can reflect on their ICU experiences 7. Further, the diary is shown to have a positive impact on patients' health‐related quality of life (HRQoL) after a critical illness, and this effect can remain for up to 3 years after hospital discharge 9.
The diaries represent a collective caring activity through which staff members share their knowledge. Furthermore, the diaries are a platform for nursing performance 10 and serve to humanise the caring process 11. As Egerod stated, the diary might ease social interactions and work as a catalyst for developing relationships 11. However, admission to the ICU might be a traumatic event for both the patient and his or her family members 13. The literature shows that family members can also benefit from writing and reading the diary, even though the diary originally was intended for the patient. The author team 14 argued that the diaries meet the needs of family members in the ICU by relaying understandable information and implying hope that the outcome will be positive. Nielsen and Angel 15 similarly stated that keeping a diary is a meaningful activity that can create space for family members to cope with a critical situation. Similarly, Garrouste‐Orgeas et al. 16 argued that a diary might play a significant role in improving the well‐being of family members of ICU patients.
Overall feedback from patients and their family members about the use of diaries has been positive 6. However, little is known about the family members of nonsurvivors. A literature review highlighted only three studies in the area. Bergbom et al. 5 included four relatives of eight nonsurvivors, via use of a questionnaire that consisted of five close‐ended and two open‐ended questions. The family members of the deceased patient expressed that the diary helped them to realise that the patient was severely ill, acted as consolation, and contributed to their ability to survive their sorrow. Combe reported similar findings 6: four family members of nonsurvivors stated that they were pleased to receive a diary of the patients' last stay and considered the diary as a real memory and a source of comfort. Lastly, Backman and Walther 1 revealed that the diary helped family members to cope with their loss.
In summary, to the best of our knowledge, no qualitative investigations have specifically investigated the experiences of family members of nonsurvivors in depth.
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